Tags Posts tagged with "original"

original

This is an update on PW Contributor Emily's story, which you can read here. I was born with spina bifida (lipomyelomeningocele), hyperbilirubinemia, antibody-mediated hemolysis, colic,...

This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to...

Happy Friday, everybody! This week we're highlighting a celebration of rare moms, thoughts on the value of prayer in the rare community, and a PBC...

Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the...

We all have those well intentioned colleagues, friends, and family members. You try to explain to them what primary biliary cholangitis (PBC) is, what’s going...

A popular book by Dr. Seuss that is often given to graduates is Oh the Places You'll Go. Now, suppose Dr. Seuss had entered the...

When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a...

Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind....

Happy Pre-Mother's Day Everybody! This week we're spotlighting four articles from or about members of the rare community. We have a tribute to nurses from...

I have always had a gusto for life. Big dreams. Grand ideas. Strong and independent with a will to fight for what I want....

My name is Stephanie. I am Tristan's (pictured above) older sister and a Registered Nurse. I spend a lot of time with him as...

May the fourth be with you! This week we're spotlighting four patient stories: one about a father whose daughter has Sanfilippo syndrome, one about losing...

Click to read parts one and two of this story. According to the Center for Disease Control, Lyme disease is the fastest growing insect-borne infectious...

To read part one of this story, click here. Morgan is a young woman in her early twenties who has been living with symptoms of...

Terrence Merrill shares the challenging emotional realities of raising a child with Sanfilippo syndrome. You can read more background about the Merrill's battle against...

When I was diagnosed with Parkinson's Disease (PD) in 2000, I first thought of my three children and how my diagnosis would impact them. How...

Happy Friday Everybody! This week we're spotlighting two parts of one patient story. We also have news on Alfie Evans and epilepsy research. Sit back...

I lost my fiancé, Ashley “Bea” Briggs, due to complications from cystic fibrosis a little over a year ago in early 2017. We met...

Have you read part one of Loukisha's story? Check it out here! When I imagined life with my husband and children my plans didn’t include...

From birth until my mid-thirties I was a very active person. I loved dancing West Coast Swing, doing yoga, and cooking large meals for...

Happy Friday Everybody! This week we're spotlighting three patient stories: an ALD patient full of optimism and love, a beauty pageant contestant with a noble...

The 2018 Mrs. Maine International Pageant will be so much more than a celebration of poise and beauty. It will also make history when...

As a female Bible college student, an outside marker of pious and godly womanhood consisted of having a male significant other. While this is...

Hope everybody is enjoying the warm weather! This week we have patient stories about a woman with MS who started a support group and a...

No matter which way you spin it, Ehlers-Danlos syndrome (EDS) is generally not a great time. EDS is a rare genetic condition that affects...